September 2016

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SEPTEMBER 2016 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. THE WEST POINT MILITARY ACADEMY VISIT
  3. KNOWLEDGE OF EPILEPSY
  4. YOU, ME & DISABILITY
  5. HUGS AND HEARTS
  6. NOTEWORTHY NEWS

1) RECIPE OF THE MONTH

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CHICKEN PARMESAN WITH ZUCCHINI NOODLES
A serving provides: ketogenic ratio: 2:02.1, calories kcal 492, 4.81 net carb grams, 17.39 protein grams


Ingredients:

  • 45g tomato sauce, Newman’s own®, Garlic & Peppers
  • 0.5g basil
  • 45g zucchini with skin, raw
  • 0.5g oregano, dried
  • 50g chicken breast, raw (no skin)
  • 10g parmesan cheese, grated
  • 36g olive oil
  • 7g almond flour

Directions:
Preheat oven to 350°F. Weigh all the ingredients .Use a spiral cutter or slicer to cut up about half a zucchini. Combine herbs, salt, pepper and almond flour in a shallow dish. Cover chicken breast with mixture. Heat about half your oil in an oven proof skillet over medium-high heat. Add breaded chicken and cook until brown, about 3 minutes per side. Remove pan from heat. Add zucchini noodles to the pan and top with cooked chicken breast. Mix the remaining oil into your tomato sauce and spoon over zucchini and chicken. Sprinkle parmesan on top. Cover with foil and cook for 10 minutes until cheese starts to brown.

This recipe has been provided from Keto Vie Café

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

2) THE WEST POINT MILITARY ACADEMY VISIT

By: Corey and Susan Tucci

Corey Tucci of Wappingers Falls, NY, who turns 25 on August 27th, has been affected by epilepsy and seizures since he was 9 years old. For the past several years, Dr. Siddhartha Nadkarni has been overseeing his treatment. Despite several medication changes, 2 craniotomies, and most recently, implant of a VNS, Corey still averages 10-15 generalized seizures a month. In September, Corey will be admitted to NYU where Dr. Werner Doyle will perform brain mapping to see if he will be a candidate for the recently approved RNS implant.

Corey rarely lets his condition get to him and faces his adversity with a positive attitude and courage. He made it his mission to bring about more awareness to epilepsy, seizures, and the treatment options. One way he helps educate others is by making classroom presentations to students. In particular, Corey was invited to West Point Military Academy to make a presentation to the cadet’s children and staff. The most recent presentation he gave was on April 29th of this year at which Dr. Nadkarni graciously attended as well.

Upon completion of his lecture and visual presentation, Corey suffered a seizure right in front of the audience. With assistance from his parents and a staff nurse, Corey got through the seizure promptly and safely. As unfortunate as it appeared, this event become a tremendous and effective educational opportunity. Dr. Nadkarni stepped right in to give an impromptu lesson plan about the brain, neurology, and seizures. The children were fascinated and bounced by asking many intelligent questions to Dr. Nadkarni. They all handled the situation with bravery and great empathy.

The definition of serendipity is “the occurrence and development of events by chance resulting in an unexpected benefit”. Not only did Corey accomplish his mission of creating awareness about epilepsy and seizures, but Dr. Nadkarni’s educational moment and influence may have planted the seeds for someone in the audience to pursue a career in the field of neurology. This may result in future contributions to the prevention and treatment of epilepsy. Kudos to Corey, Dr. Nadkarni, and West Point Military Academy for allowing them to participate in this opportunity.

3) KNOWLEDGE OF EPILEPSY

By: Sloka Iyengar, PhD

Epilepsy is one of the most common neurological disorders, but there is not much knowledge among the general public about its causes and treatments. Epilepsy can occur in individuals of all ages, and the incidence is especially high in the very young and the very old. Since epilepsy and other neurological disorders are rarely a topic of study in schools, it can lead to stigmatization of children with epilepsy by their peers and classmates. The misconceptions regarding epilepsy are numerous, and it is important that children be educated early on about why seizures occur, seizure first aid and that having seizures is not something that makes people inferior to others. It is important also to teach them that people with epilepsy can and do lead fulfilled lives.

A recent study done in Austria sought to discover what students in grade 10 know about epilepsy, and to create and implement lessons to improve their awareness about seizure disorders. To figure out whether the module had indeed improved attitude and awareness, the authors administered questionnaires one week before the educational sessions, one week after, and lastly, two months after the class. The questionnaire had queries about knowledge and attitude regarding epilepsy e.g. the similarities between epilepsy and seizures, and whether the students knew that surgery is a possible way of treating seizures. The authors chose students of the tenth grade because it is around this time that perceptions and attitudes are formed. Hence, intervention around this time is more likely to make an impact. Also, students in the tenth grade in Austria are being taught advanced biology and basics of neuroscience. The authors mention that this intervention would have worked in younger students as well.

A challenge that the authors faced was that there was no teaching material available in German, which they had to create. The only material that existed until now was the information given to teachers regarding how to deal with students’ seizures. Hence, the authors prepared material from scratch, which is now freely available to use. The educational material was given to students along with their regular biology classes and was spread over three sessions and used a variety of methods e.g. didactic, video, research projects etc. The authors recruited 168 students from different schools, and they were divided into two groups – one group received the training, whereas the other group didn’t. All students took the three questionnaires.

The pre-class questionnaire revealed that students have incomplete knowledge regarding epilepsy, and not altogether positive attitudes regarding people with epilepsy. After the class, the authors found that the knowledge had significantly improved and that the students’ attitudes were quite positive. For example, the students who had taken the course did not believe that people with epilepsy were insane, dangerous, erratic or less intelligent. In addition, no one felt that people with epilepsy shouldn’t be allowed to have children or marry.

This study showed that even with minimal cost and time, students can be educated about epilepsy and their attitudes can considerably change. Students in this study were all interested in the material, and were keen and eager to know more. This study puts forward a module that could be used by other teachers in other countries depending on the time they have in class and the age of the students. In addition, people with epilepsy could be invited to the classroom to talk to students about their experiences living with epilepsy.

As a basic epilepsy researcher, Sloka S. Iyengar, PhD used animal models of epilepsy to understand what makes the epileptic brain susceptible to seizures and comorbidities. Currently, as a clinical epilepsy researcher at the Northeast Regional Epilepsy Group, she conducts clinical trials for people with epilepsy. She is also a science writer and advocate.

 

 

 

 

4) YOU, ME & DISABILITY

Meet Becca:

I was diagnosed with epilepsy in 2007, after suddenly having a seizure on the way to the doctor’s office. I was a freshman in high school and was very confused about my diagnosis at the time because the doctors were unsure of what exactly was causing my seizures. I had no family history of seizures. Throughout high school, I did not tell many people about my diagnosis because I felt unsure of how I would explain what was going on with me. My family and close friends were very supportive and helped me embrace my diagnosis. When I entered college, I met with my neurologist and was taken off my medication because my EEG came back normal and the doctors thought that I had “outgrown my epilepsy.” Towards the end of my college career, I had a few seizures and was put back on medication after my EEG showed that I had seizure activity again. This was a strange time for me because I had to embrace my diagnosis yet again, at a different point in my life. My dad and I had a long conversation later in the year about how I needed to take responsibility for my diagnosis and realize that there were certain precautions I needed to take while living my life with epilepsy. Ever since then, it has been easier for me to come to terms with my diagnosis and share my story with others. I am currently 24 years old, and have had about eight seizures in my lifetime. The last seizure that I had was in April 2014, so I have been seizure free for over two years now. Although I am very grateful to be able to say this, it is still vital for me to continue to take care of my health. I am so thankful that Jess and I were able to make the video “You, Me, and Disability” to help raise awareness and educate people on disabilities. This video has made me proud of who I am--disability and all!

Jess:

I was diagnosed with my seizure disorder 2006 and in 2009 I was diagnosed with ADD and my learning disability. I have about 2 to 3 seizures every 4 to 5 weeks. When I got diagnosed with my seizure disorder and a learning disability, it was very difficult for me to gain an understanding of how I needed to live my life. In regards to my seizures, I had to change my diet and get used to not being able to drive since my seizures are so frequent. I am currently on the ketogenic diet which is a high fat low carb diet. This diet has helped reduce the number of seizures I have, but it has been hard to completely eliminate carbs from my life especially sugar, pasta, and bread. On the other hand, it took me a very long time to fully accept that I had a learning disability. For many years I was embarrassed that I learn differently and need accommodations like a reader for exams and auto books to gain a better understanding of what I am learning. It was not until 2010, that I realized having a learning disability does not make me unable to do things, but makes me unique and different. I still struggle with the diet and my learning disability, but with the support from my family, doctors, friends and school, I have become more confident and accepting of my seizure disorder and learning disability. I am now proud of my disability and not embarrassed to say I, Jessica, a 23 year old, have a learning disability and seizure disorder.

You, Me, & Disability Video

Our video (click here) was originally created as a project for our disabilities class at Columbia University School of Social Work, however, it was created with the intent to be used for larger purposes after we had submitted it and received feedback along with our grade. We wanted to raise awareness and educate people on disabilities through our own personal history to emphasize that everyone experiences disabilities differently. Our two stories are very different, yet are linked through disability and adaptation. Through the making of this video and our continued efforts to share it with as many people possible, we have learned that disability is unique to everyone. Everyone adapts and embraces it in different ways. We are excited that we have the opportunity to share our experiences with you, and hope that you will share them, as well as your own, with others. For further inquiries, please do not hesitate to contact us at youmeanddisability@gmail.com.

5) HUGS AND HEARTS

FACES co-founder, Dr. Orrin Devinsky will be honored by the Danny Did Foundation (DDF) as its medical advocate of the year at their annual gala on October 29th in Chicago. The DDF was established by parents, Mike and Mariann Stanton after they lost their son Danny to Sudden Unexpected Death in Epilepsy Patients (SUDEP) at age 4. The organization focuses on improving communication around the risk of SUDEP, and works to enhance awareness and access for monitoring devices that can help to enable early intervention when a seizure occurs. Danny Did is a nonprofit partner to the North American SUDEP Registry, a collaborative effort launched by Dr. Devinsky to better track epilepsy-related deaths.

“Dr. Devinsky is known throughout the epilepsy community as someone who is prolific and relentless in his pursuit of better therapies,” said Tom Stanton, DDF executive director. “He is not only a leader among his peers, but also a champion for patients, parents and advocates. In the fight against epilepsy, he shares our sense of urgency for progress. We are truly grateful for the energy that he puts forth to find solutions, and excited to honor him in October.”

To learn more about the Danny Did Foundation and its “Evening of Hearts & Hugs” event, please click here.

6) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. A Year Without Oliver Sacks
  2. A Risk for Sudden Death in Epilepsy That Often Goes Unmentioned
  3. Govt: Marijuana Still as Dangerous as Heroin, Ecstasy
  4. Epilepsy May Triple ADHD Risk, Danish Study Finds
  5. Is It Safe to Switch to Generic Epilepsy Medications?
  6. Managing Epilepsy in Patients with Intellectual Disability
  7. Medicinal Cannabis News: Marijuana Users Increase; Research Says Weed Is Beneficial to Control Pain
  8. Drugs May Not Deserve Reputations for Sleep Disruption
  9. Solving the Sleep Problem: We All Need It, But We’re Not Getting Enough
  10. Can Epilepsy Now Be Controlled with Diet?

EPILEPSY HORIZONS

Epilepsy advocate, Evangeline Williams created “Epilepsy Horizons” and spends her time reducing the stigma and educating the public on this disorder. She has visited schools, senior citizen centers, and police stations. She is raising epilepsy awareness throughout her community. FACES and The Epilepsy Foundation have donated materials for Evangeline and she is grateful for their support. Here, she is posing with Mayor De Blasio in the Bronx at a Town Hall meeting.

 

 

FUN IN THE SUN

Our 2016 Dr. Blanca Vazquez Summer Camp Scholarship Recipients had a blast this summer!


Gitilee Romai at Camp Hasc


Sophie Hoffman at Camp Kehilla

GOOD LUCK FACES COLLEGE SHOLARSHIP RECIPIENTS!

NOTES OF GRATITUDE…

“I am a proud recipient of a FACES College Scholarship award. As begin classes in the Fall at SUNY Albany, I will think of your generosity. Both my family and I appreciate your thoughtfulness”

“I can't tell you how much I appreciate the financial support. It will be very helpful with my tuition and supplies I will need for this upcoming semester of nursing school”

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